Newly diagnosed

I am a 63 year old woman in the United States and have been diagnosed with Myelofibrosis. Had a bone marrow biopsy and it is 70 to 90 percent compromised. I will be starting Jakafi on Tuesday, waiting for it to come in the mail from insurance company. I am extremely fatigued, lost 30 pounds, bruise easily, stomach problems every day and headaches. Also positive for JAK2 /617F gene mutations, (I think they are the correct numbers, also enlarged spleen and liver.

Looking for encouraging words, I am pretty scared and wondering what the future holds. I have a great dr who knew from the first visit what I had but had to run tests and do biopsy to confirm. Confirmation meeting was yesterday.

Thank you all for listening and I wish you all well.

28 Replies

oldestnewest
  • Hi Realtorlin , touched by your story. Can I ask why you haven't been diagnosed earlier as you seem to have symptoms which would debilitate you well before now, or has your MF blown up recently. What I would say is you should find some relief with the Jakafi for a number of your symptoms some within a few weeks others over a longer span. . It may lower your platelets initially but this can be managed. . Your general wellbeing should improve and your appetite with it. .

    It's a remarkable drug, and I sincerely hope you reap the full benefit it can offer. Other jak inhibitors are on the horizon or in development / trial so please don't give up hope there. . Chris

  • Hi Chris,

    Thank you for responding to my post. I went to doctors for years telling them my symptoms and they did the standard blood work and said they didn't find anything wrong. Last October I was sent by my doctor to the cancer center because my b12 was over 2000. The doctor there ran test and said she found nothing wrong. A week later I got a letter from her that she has retired. I quit my job in February because I could not stay awake at work. I went to my family doctor again telling her that I am exhausted. She sent me for blood work, still have high b12 of over 2000, so she sent me back to the cancer center. This time I met with a young doctor who asked me questions and said he was almost 100% sure I had myelofibrosis but he had to do test to confirm. After more blood tests, ct scans, and a bone marrow biopsy we have our answer. My doctor said I have had this a long time. I have tried for many years to find out what was wrong but never had a good doctor until now for whom I am truly grateful. Ir is Just hard to believe and I feel lost and scared. I read that you had a stem cell transplant, how are you doing and feeling? I will keep you in my thoughts and prayers. Linda

  • WOW, , I am amazed that it hasn't been picked up sooner because when I was diagnosed it was a toss up between CML and MF. But the key was I was diagnosed relatively early. . Yes it is scary there's no hiding that but trust me I and majority on here have felt and still feel the same, but what I would say is you have finally got a diagnosis and you are about to start on arguably the best drug available so as I said before don't despair. .

    It's a pity you hadn't attended the Mayo clinic in Rochester Minnesota as I'm sure they would have nailed it much earlier. . But the US is so vast compared to the UK, and as these are rare conditions sometimes I guess you have to drop lucky with your Doc / Physichian. .

    I'm doing OK but a few hiccups to contend with. . .

    Best wishes

  • I have ET and am on HU, I don't know much abut the Jakafi, but I hear it will give you some relief from your symptoms.

    You'll get some good information from this site. It is very scary when you are first diagnosed (especially if you Google your disease!! Don't believe everything on that their internet!). Most people on the site seem to manage their conditions quite well.

    Best Wishes

    Lizzie

  • Thank you for responding back to me Lizzie. It is good to know there are people to talk to who have encouraging thoughts. I appreciate it very much and I hope you are feeling well.

    Linda

  • Hi there, Realtorlin, and welcome to the site. Like you, I was diagnosed with myelifibrosis late, when I was already in stage Intermediate 2, and was shocked and scared by the diagnosis. You will learn to live with your new companion and manage your symptoms. There are people who will listen to you, advise you and help you. There are some medical advances to palliate the symptoms, such as Jakafi, there are also new drugs being developed if you have large spleen, and of course, there is the stem cell transplant, which our own brave JediReject has just undergone and seems to be doing very well on. You will learn about all these things as you go along and adjust your life to accommodate it. Try to modify your diet to give yourself a little bit more energy, get some gentle exercise to make sure your bones and joints stay mobile and rest when necessary. It looks like you have a knowledgeable and sympathetic doctor, which is hugely important. Good luck. Let us know how you get on. And of course ask questions and talk to us. It helps. x

  • Hello there. It's very normal and to be expected that you feel frightened and unsure but things will ease for you as you adjust. I have been on Jakavi for almost a year now and what a difference it has made to me. My spleen went from 24cm to 11cm in a few months and the tiredness lessened although I still get periods of extreme fatigue - it just does not last. The bruising also seems to have improved along with the awful sweats.

    The biggest nuisance is I just don't manage to exercise like I did but I keep trying. I am 68 by the way and started with Polycythemia three years ago. I still get moments of unease and wonder where it all leads to in the great scheme of things. How lovely to have a good doctor who understands as I am fortunate too and am with a wonderful team. Very best wishes to you and welcome aboard.

    Linda x

  • Hi Linda,

    Thank you for responding to my b post. I am happy to hear you are feeling better and I am looking forward to feeling better soon too. This exhausted feeling that I feel is just awful, I was such an energetic person all of my life. I am grateful for all of you on this site, it does help to know you are all out there!

    Linda

  • Your story is the same as my husband. Diagnosed with MF age 63 and started jakafi and had excellent results with it. Symptoms quickly disappeared so hopefully you will start to feel better very soon. Unfortunately for him, his MDS started to mutate and had a stem cell transplant last year. Rocky road but starting to feel better daily. Keep positive, and let us know how you get on.

  • Thank you for responding back to me. I don't know enough about this disease to know what it means that it mutated. Happy to hear your husband is doing better with a stem cell transplant. I didn't know that was an option for someone who is older. I have read that it is a cure for this disease.

  • Hi,

    Sounds like you have had a rough ride, not sure what else I can say I have ET and MF scares the life out of me I hope you can find some comfort through this site,

    Good luck,

    Ourlife

  • Hello and welcome . I hope you will get some comfort from this forum lots of lovely supportive people on here .

    So glad you have found a good Doctor now and I hope he can get you some relief .

  • I live in London, U.K. I am 68. I was diagnosed with MF last November after living nearly symptom free with ET for 15 years. I started Jakafi in April. I had an almost immediate response. My spleen quickly shrunk, night sweats ceased and I was able to eat more normally. My energy levels also increased having been very tired too. So I do hope the drug helps you too. Please post and let us know. Best wishes, Jenny

  • Welcome to the site Linda. I have PV and my dad had MF. I wish you good luck with your jakafi and hope it works quickly for you and that your symptoms are reduced. Keep us posted. Mel x

  • Hello Realtorlin, welcome to our forum, I can see that you have had some lovely replies to your post, the members of this forum are a great bunch of people who are extremely supportive. I can completely understand that you are feeling scared about your diagnosis, this is something we all go through, but we are here for you. If you would like me to send you any of our information booklets please send your postal address to me at maz.cd@mpnvoice.org.uk. Also, if you would like to have a buddy to talk to then let me know, I can email you the information and a request form, a buddy might help you as you will be matched up with someone who has the same MPN as you and is taking the same medication. If there is anything we can do to help just let me know. Best wishes, Maz.

  • Thank you Maz for your response. I have your Myelofibrosis Kit that you sent to me about two weeks ago when my doctor said he was pretty sure I had this. That has been so helpful to learn about this disorder.

    Yes, I would like a buddy, that would really be helpful to me. So many thoughts are going through my head. I am really scared. I assume it would be an email buddy is that correct? I don't really have the energy to talk on the phone at this point. My email address is quilterindelaware@gmail.com if you need that.

    Thank you so much, this is a great site which I am grateful to have found. Everyone is so helpful and kind and I appreciate that so much.

    Linda

  • Hi Linda, glad the MF info helped. I will email a buddy request form to you. Maz

  • Hi Maz,

    The form to fill out for a buddy is read only. I don't have any way to send that form back to you. Do you have a form I can fill out online?

    Linda Tressler

  • hi Linda, the form is a word document, are you using an iPhone or iPad, if you are then you need an app to complete it. I can send you a PDF form you can write onto, I will email it tomorrow to you if that's ok. Maz

  • Hi Maz, I was using my laptop, I had completed the form but then I could not send it. Ok I will try the PDF form, tomorrow is fine...thank you so much!

    Linda

  • Hi Linda, if you were able to fill it in you need to save it in a folder before you can send email it back to me. Maz

  • I tried to save it but it said it was a read only document and would not allow me to save it.

  • Hi Linda, I know I'm a bit late in responding, sorry! I feel for you with the delayed diagnosis and exhaustion 😞 I am 60 and have Myelofibrosis. Was diagnosed with Polycythaemia when I was 37; then progressed to Myelofibrosis at age 51. Interestingly, I had the same problem getting diagnosed initially with Polycythaemia. Doctors kept sending me away, saying nothing was wrong until the day I had a thrombosis! But when I was 57, things got really bad and I was too sick to have a transplant. Enter stage - Jakafi 😁 In Australia, it's called jakavi (not sure why?) At any rate, it not only saved my life, but has given me a better quality of life. Symptoms have reduced dramatically, although still anaemic and catch viruses now and then. I have only good things to say about this drug. It is always a shock when we get news that makes us face reality in a big way. But that feeling will subside once things settle down. It's a great time in medicine and this drug is the first one ever to be discovered / used for Myelofibrosis. So I reckon that's brilliant for us! You're in good hands and will be treated for Myelofibrosis with an excellent drug. And I'm sure you deserve to rest as much as you like! I used to be active too, but it's just accepting that you are living in a different landscape now. It's just as beautiful, only our minds need to get use to the change of scenery. I wish you all the best, and know that the great people on this forum will be a marvellous support! Take care x Jeanette

  • Thank you Jeanette for writing to me. My Jakafi comes tomorrow and I have been so nervous about it. What you wrote comforts me a great deal. Thank you so very much, I really feel so much better now.

    Linda

  • Hi Jeanette,

    Are you still doing well on Jakafi?

    I was on 20 twice a day for 3 weeks snd felt great and theN my dr lowerd my dose to one 20 mg pill a day because my kidneys were being affected. Since taking only 20 mg I have zero energy. I just started taking 15 mg twice a day so I am hoping to feel better soon. Been wondering how you were and how long you have been taking the Jakafi?

    Linda

    Linda

  • Hi Linda, just woke up here in Australia and saw your email 😊 It sounds as though you've been going through an adjustment process with the drug. The specialists have to work out the best dosage for you based on your body's reaction to the drug, and I'm sure you're in good hands. I am doing well on the drug, but it's important to point out that, like you, my body has reacted to the drug in a way that other adjustments have had to be made. For example, my cholesterol used to be perfect, but it got so bad that I had to go on statins to control it. I remain anemic, but am managing without transfusions now. Also, I have gained more weight than I'd like despite being on a healthy diet and walking daily. I make sure that I stay away fromcold people with coughs and coldswith (including the grandchildren at times!) I consider these 'problems' to be minor, because I know what the alternative would be without Jakafi. I have been on this drug since May, 2013 and am on 25mg twice a day. I was pretty much at the end of the road when I got this drug so, naturally, I have only good things to say about jakafi. With regard to your fatigue; that is something that, first, you have to accept as being a reality. However, it is important to exercise (walk) when you can, and rest regularly. Listen to your body's rhythm and you will increase your stamina. At least, that's what I have found💜 I used to be physically active too, and it takes a wee while to get used to the new you and the new life you have ahead of you. It is a transition process. 😇 One final thought. You have been ill for quite some time, and your poor body has been working hard to keep going. Now that you are diagnosed and being treated, allow time and the drug to do its thing. Plenty of rest strengthens the mind as well as the body and helps you to stay positive! Keep in touch. Jeanette

  • Very timely! I get the drug on a compassionate access program here in Australia, however I believe it is about to go on to our Medicare system here very soon. All the very best to you! 😊

  • Absolutely timely, I have been feeling blue and scared about this all day. I don't know if we have any special programs for this medicine here in the U.S. I will have to check into that.

    Linda

You may also like...